Government advisors fail to protect public's genetic interests

Human
Genetics Alert (HGA;1) today criticised the Human Genetics
Commission for failing to protect people from the effect of the
genetics revolution.The Commission's report on personal genetic information pulls
its punches in key areas including:

Genetic
privacy
:

the
Commission's proposed legislation on genetic privacy only covers a
narrow set of circumstances, and fails to establish the basic right
of genetic privacy. The
Information Commissioner has admitted that the Data Protection Act
may fail to protect donors against 'inappropriate disclosure' from
genetic research (2).Clear
genetic privacy legislation is especially needed, given that
Parliament is likely today to pass regulations allowing
researchers and NHS staff access to patients' confidential medical
data, without consent (3).

Genetic
discrimination:

the
Commission only proposes that the Government 'consider'
legislation against genetic discrimination by insurers, whilst
proposing no more than monitoring and voluntary notification by
employers of the use of genetic tests.HGA calls for immediate
legislation to ban genetic
discrimination.

Commercial
exploitation of genetic samples:

the
report does not oppose the practice of patenting genes taken from
patients' samples, despite widespread public concerns about
this.Clear rules
governing industry access to patients' DNA and medical data are
desperately needed, but the Commission only remarks vaguely that
'a morally sensitive regime can and should be worked
out'.

HGA
Coordinator, Dr David King, said: "I am very disappointed by this
weak report, which does little to take the debate forward.I am reminded of Sherlock
Holmes' case of the watchdog that did not bark.Instead of protecting the
public, the HGC seems scared to offend the medical research
establishment.After
all the medical scandals, surely we deserve something
better."

Notes for
editors

1.
Human
Genetics Alert is an independent watchdog group, funded by a leading
British charity.

2.
Information Commissioner's submission to Human Genetics Commission,
cited in the HGC's 'Comments to inform the Government response to
the House of Lords report on Genetic Databases', June 13th
2001.

3.
The Health
Service (Control of Patient Information) Regulations 2002 will
debated in the House of Lords on May
21st.